Real-World Hoarders and Obsessive-Compulsives: A Conversation with an OCD Expert

When I called to interview Dr. Michael Jenike — one of the world’s leading experts on obsessive-compulsive disorder (OCD) — he noted that I’d reached him exactly on the dot, and joked that I might have a touch of OCD myself. He’d nailed it. I do have a minor case of the disorder.

People with OCD have a sense of extreme anxiety related to certain thoughts or experiences, and are driven to perform specific repetitive rituals or behavior meant to reduce that anxiety. About 2% to 3% of the population suffers some form of OCD. It has been depicted on television (Monk) and film (As Good as It Gets), and more recently in the reality show Hoarders, which chronicles the lives of people with severe OCD. These sufferers may hoard items to the point at which their houses literally overflow with filth, or they may refuse to leave their homes for years, causing them to lose their jobs and relationships. They are paralyzed by their disordered behaviors, such as nonstop hand-washing or repeatedly checking to see if the stove is off.

Jenike, the founder and medical director of the OCD Institute at McLean Hospital in Belmont, Mass., has seen it all. He has made house calls to OCD sufferers around the world, from rural Georgia to Saudi Arabia. He also chairs the scientific advisory board of the International OCD Foundation, which will host a live Web event Saturday night during which people with OCD will tell their stories and offer the hope of recovery — and a bit of humor — to affected people and their families. (More on Time.com: Watch a video on OCD vs. appetite)

Tune in here on Oct. 16 starting at 7 p.m. for the live event. To find out more about OCD, keep reading.

Q: How did you become interested in working with OCD?

A: I saw my first cases in the late ’70s, when I was a resident interested in geriatrics. I saw a patient [with OCD] who was fascinating. In a very convoluted way, I ended up on the Larry King show to talk about OCD. And then I had thousands of calls. There was no place in the country where OCD patients could go. I got more and more interested and saw more and more patients, and eventually shifted my research career to study it.

Q: How extreme does the disorder get?

A: You can get patients who can’t walk or talk [due to OCD]. It’s really pretty dramatic. I just came from a [patient’s] house. She’s afraid to take medication and can’t do behavioral treatment because it makes her too anxious. It really is tough — sometimes the toughest thing is just getting people to agree to do treatment.

There was a fellow whom I wrote a book with called Life in Rewind — he certainly falls into the category of the most extreme. He was living in a basement in utter filth. He was afraid of moving into the future. [His mind was filled with the idea that if he didn’t reverse any action he’d just done, he’d die.] He actually was remarkable: he’s now married and working and has two beautiful kids.

Q: You have to make house calls to see some of these patients, because they might be afraid to come out of the bathroom or the basement and will literally stay there for years.

A: Yes. I would go see this patient and spend quite few hours with him. None of the behavioral therapy or medication seemed to make much difference.

Q: How did he recover?

A: He decided [that he needed to recover], partly to honor people like me who were trying to help him. He worked out his own way, using some of the behavioral techniques he’d been taught. He basically figured out way to do his own kind of behavioral therapy. It’s very unusual for someone that sick to be able to muster the healthy part of brain [to overcome the illness]. (More on Time.com: Amnesia and a Camera: Photos as Memories)

Q: What is the treatment for OCD?

The very best is the old standard, refined cognitive behavioral therapy (CBT). That is by far the best treatment and the secondary treatments are medications that affect serotonin [drugs like Prozac and Zoloft]. But the most important thing that’s often overlooked is CBT.

Q: How does CBT work exactly and how do you use it in your residential treatment for OCD?

A: At McLean Hospital, people often stay for a few months. The first thing we do is have them make list of rituals, [things they] avoid and obsessive thoughts. We start low on list with the things that cause the least anxiety and start exposure therapy. For example, touching things that cause anxiety. They get anxious at first but eventually they’ll habituate and we can move up the ladder and go to something more anxiety provoking. We keep working up until we get to the most anxiety-producing [things]. When we can get them to habituate [to those], they generally do very well.

Q: How effective is treatment?

A: It depends on who you read. If you read some of the studies, you will think 90% of people get better. But in those studies, dropouts are not included. They only analyze people who go through the whole course. If you take everybody, about 50% to 60% have a good response. If you add medication, there’s even more response.